Childrens Memorial-Chi....anyone been ?

[ziva]

My pediatrician is referring us to Childrens Memorial....Dr. Shulman in Chicago for my DS7, and DD6 PANDAS. I think to an infectious disease specialist/and or immunologist.....she said they actually specialize in strep.

My daughter is having a symptom flare, but not showing positive on the rapid, and I would assume the culture. So, she is hesitant to prescribe abx. Although, this afternoon she's feeling sick, with a cough.

 

She wants things to buble up a bit, so that Childrens can see exactly what's going on.

 

Has anyone been there? .... Or have thier ped. do the same?

 

Of course, I just want it to stop. I want the abx. This will be the third time she has had strep in 2 months. So, I don't know if it's ever even gone away completly.

 

She said that if they can't get in tomorrow, then she will prescribe zithromax for her in the morning.

 

But I just can't stand that she is having to go through this.

 

AGH!

 

Edit...I just saw on previous posts that this Dr. Shulman doesn't believe PANDAS exists! WHAT!?!?

Has anyone seen him?

Edited April 28, 2011 by ziva

[MomWithOCDSon]

Ziva --

 

I wish I could have better news for you, but unless things have changed dramatically in the last 12 months, I fear you will be wasting your time and energy at Children's. We're in the Chicago area, too, and were also directed that route when our son first presented with PANDAS; our experience was a dismal failure.

 

I believe the infectious disease/strep expert she may be referring to is Dr. Stanford Shulman, the head of Children's Infectious Disease department. Unfortunately, however, Dr. Shulman is a famous (or infamous) PANDAS naysayer who's been published repeatedly on the topic of how PANDAS doesn't exist and how responsible practioners should not be attempting to treat a non-existent condition. And because he sets the tone for the entire department, I fear you will find deaf ears all the way around at Children's. We did, whether it was Dr. Shulman's office directly, or their pediatric psych department, or even our "independent" pediatrician who came up through the ranks at Children's and also refers some of her patients to Dr. Shulman. Ultimately, she agreed to help us with antibiotic prescriptions, more or less "under the table," based on the "do no harm" section of her Hippocratic oath, but despite 2 years of history with us and our DS and seeing his healthier status ON the antibiotics as opposed to OFF them, she still states that she's "not convinced PANDAS exists." More recently, when we appealed to her for some more assistance during DS's current exacerbation, she said, "Well, I wouldn't suggest you go to Children's because you'll get no help for PANDAS there," and instead she referred us to a couple of pediatric neurologists with Rush St. Luke's; she didn't know for certain if they know or accept PANDAS, but she thought they were good at their jobs and would be worth a try. In the end, our health insurance doesn't include that particular medical group, so I did not pursue it.

 

If you want some more information, feel free to PM me. Sorry to burst your bubble, but there are other folks in the area who can and will help. They're just a little harder to find because Children's so prevails in this area.

[pixiesmommy]

We're in the Chicago area and used Dr K for PANDAS (now have Lyme, so have a new dr, an LLMD.) I have a family dr who will rx abx, but we are constantly coming up positive on rapid strep tests, so not sure if he would give me the rx if not, but he DOES believe in PANDAS. I'm happy to share his name if you would like. We have not found a strep specialist in our area, but have been to many infectious disease doctors.

[ziva]

My ped. did end up ordering abx. for my DD. But, it was a 5 day zithromax.

 

I do really love my ped......so I am going to get her some info, and go in for another talk with her....and go over some options.

 

My apt. with Dr. Shulman isn't until the May25th (although, I'm not sure we will even go), so I think that gives me some time to get every strep test poss. for my kiddos.

 

There has got to be strep somewhere. They are getting sick, after 24hrs of their PANDAS symptoms starting. Cough, not feeling good etc. I just can't believe they are not testing pos. So, we'll try for blood tests, and gut.

 

I'm not sure we're ready for proph. abx. But, I want to be able to get them on something when symptoms flare.

 

What's crazy, is just when I think we have a handle on things....it all goes insane again.

[SarahJane]

Have you checked for mycoplasma pneumonia? I ask because of the cough. It can be a trigger too & is not as innocuous as many peds will say it is. Can be hard to kick. We're dealing with it in our PANDAS son right now.

[SarahJane]

Have you checked for mycoplasma pneumonia? I ask because of the cough. It can be a trigger too & is not as innocuous as many peds will say it is. Can be hard to kick. We're dealing with it in our PANDAS son right now.

[SarahJane]

Have you checked for mycoplasma pneumonia? I ask because of the cough. It can be a trigger too & is not as innocuous as many peds will say it is. Can be hard to kick. We're dealing with it in our PANDAS son right now.

[ziva]

Have you checked for mycoplasma pneumonia? I ask because of the cough. It can be a trigger too & is not as innocuous as many peds will say it is. Can be hard to kick. We're dealing with it in our PANDAS son right now.

 

I did ask them to check for Mycoplasma. But now that I think of it, I didn't see it on the copy of the lab report that they sent me. I will have to call in tomorrow and ask again. When I brought it up the Dr. that I saw at the time of the blood dray..(not my normal ped.)she just kind of brushed it off, but did say that they would test for it.

 

It would make more sense, because it was more of a cough, than a streppy situation.